Hi, I was diagnosed with MS in 2005, just 11months after the birth of my first son. I presented with numbness on my right hand, forearm, thigh and foot. After a lot of questioning and medical history, my neuro and I were fairly sure that I had begun having symptoms 10 years before at the ripe old age of 18. My MRI had a lot of lesions, most of which were old. I started Rebif and 6 months later, I had a great report from my first follow up MRI. 2 weeks later, I had an attack of Nystagmus. IV steroids resolved that.
November 2006, I was diagnosed with Ewing's Sarcoma localized to my clavicle. I discontinued Rebif in order to do chemo. Over the next 11 months, I completed 6 rounds of vincristine, cytoxan (my dosage was as high as the hicyer's, but it was only 1 dose every 6 weeks) adriamycin/dactinomyacin and that alternated with 6 rounds of ifosfomide and etoposide. I took chemo every 21 days, they just did VAC on 1 day and 3 weeks later i did one week of IE. that repeated 6 times- I had surgery after 4 rounds to remove my clavicle and then completed 8 more after I healed from the surgery. I completed treatment in 2007 and waited 6 months before getting back on dmd's. After a clean MRI, We decided to try copaxone and I quickly grew to hate daily shots. I did not take them daily as I should.
I discontinued treatment less than a year later in hopes of conceiving another child, even though I was in menopause due to the chemo. After trying to conceive for well over a year, unsuccessfully, my reproductive endocrinologist ran a lot of tests and broke the news that I had less than a 1% chance of ever conceiving a baby using my own eggs. 6 weeks later, God showed them all who was in charge when I naturally conceived
. Our little miracle was born at 36 weeks and is a little package of dynamite!
6 months after his birth, I had an attack. The back of my head went numb. It resolved without meds in 24 hours, but scared me enough to resume copaxone... just not for long. I fell off the wagon after a few months.
I just had my second MRI since completing chemo 6 years ago. No activity at all on either. I have some old plaques, but nothing new. Nothing has any signal and many of my old lesions have disappeared. My neuro asked me how much longer I was going to roll the dice and stay unmedicated. I decided to try tecfidera.... waiting for approval from my insurance now. I also have plaque psoriasis and hope it will give some relief there.
I still have my original symptoms from before I did chemo-some paresthesia in my right hand, fatigue, floaters in my vision, overactive bladder, foot drop and Uhtoff's phenomenon. A few symptoms went away and have stayed gone, but nothing new. At this point, I would be beyond grateful if I just stayed at this level. That is a tremendous change from when I was diagnosed in 05 and was stuck in the 'unfairness' of it all. Sarcoma put that in perspective.
I have had the genetic testing through 23andme (part of the research group for sarcoma) and have several risk factors for MS due to a couple of SNP's.
Thanks for reading this long, story and I look forward to being a part of this group! If you have any questions, don't hesitate to ask.
November 2006, I was diagnosed with Ewing's Sarcoma localized to my clavicle. I discontinued Rebif in order to do chemo. Over the next 11 months, I completed 6 rounds of vincristine, cytoxan (my dosage was as high as the hicyer's, but it was only 1 dose every 6 weeks) adriamycin/dactinomyacin and that alternated with 6 rounds of ifosfomide and etoposide. I took chemo every 21 days, they just did VAC on 1 day and 3 weeks later i did one week of IE. that repeated 6 times- I had surgery after 4 rounds to remove my clavicle and then completed 8 more after I healed from the surgery. I completed treatment in 2007 and waited 6 months before getting back on dmd's. After a clean MRI, We decided to try copaxone and I quickly grew to hate daily shots. I did not take them daily as I should.
I discontinued treatment less than a year later in hopes of conceiving another child, even though I was in menopause due to the chemo. After trying to conceive for well over a year, unsuccessfully, my reproductive endocrinologist ran a lot of tests and broke the news that I had less than a 1% chance of ever conceiving a baby using my own eggs. 6 weeks later, God showed them all who was in charge when I naturally conceived
. Our little miracle was born at 36 weeks and is a little package of dynamite! 6 months after his birth, I had an attack. The back of my head went numb. It resolved without meds in 24 hours, but scared me enough to resume copaxone... just not for long. I fell off the wagon after a few months.
I just had my second MRI since completing chemo 6 years ago. No activity at all on either. I have some old plaques, but nothing new. Nothing has any signal and many of my old lesions have disappeared. My neuro asked me how much longer I was going to roll the dice and stay unmedicated. I decided to try tecfidera.... waiting for approval from my insurance now. I also have plaque psoriasis and hope it will give some relief there.
I still have my original symptoms from before I did chemo-some paresthesia in my right hand, fatigue, floaters in my vision, overactive bladder, foot drop and Uhtoff's phenomenon. A few symptoms went away and have stayed gone, but nothing new. At this point, I would be beyond grateful if I just stayed at this level. That is a tremendous change from when I was diagnosed in 05 and was stuck in the 'unfairness' of it all. Sarcoma put that in perspective.
I have had the genetic testing through 23andme (part of the research group for sarcoma) and have several risk factors for MS due to a couple of SNP's.
Thanks for reading this long, story and I look forward to being a part of this group! If you have any questions, don't hesitate to ask.
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